This process includes assessing, planning, implementing, and evaluating options and services to meet the child and family's
individual needs. Care coordination is a vital component of the medical home. Building a sense of trust between families and
the medical home and responding to their needs in a timely and coordinated manner is essential. Care coordination within a
practice will:

Practice-based care coordination, deliverd by the Medical Home team, is the focus of this page. Children with complex conditions
may have multiple individuals or agenices coordinating their care – insurance company case managers, public health agency
care managers, charitable organization health navigators, etc. Parents often feel like they need to coordinate their coordinators,
a need the Medical Home could strive to minimize.

The Care Coordination Process

Assessing and Identifying Needs - Activities performed by a care coordinator are based upon a comprehensive assessment that includes a psychosocial assessment
of the child and family. Identification of needs is the first step in the care coordination process. Develop and use an assessment
tool which will assist in gathering the information you will need to develop a plan of care.

Developing a Plan of Care - After identifying the needs, a plan of care is developed with the family and goals and outcomes discussed. The care coordinator
may clarify with the family which action steps the family will address and which will be addressed by the care coordinator.

Implementation - The plan is implemented and actions are taken to work towards the desired outcomes. Identified service providers and programs
all work towards fulfilling the needs of the family. The care coordinator organizes and assists the family with resources,
referrals, coordination of care with specialty physicians, with schools and other agencies.

Evaluation - Periodic evaluations to reassess the plan of care and address new needs are performed continually.

Questions and Answers about Care Coordination

Who needs care coordination?Children and families with multiple needs and those that require multiple services, providers and resources are usually a
good place to start. Examples of children and families with multiple needs and services include:

Children who are newly diagnosed;

Families who recently have moved into the state or to a different area of the state;

A child with a progressive condition that requires multiple interventions, hospitalizations or interferes with attendance
at school;

Families with multiple agencies involved in the care of their child;

Families with limited financial resources;

A parent who is developmentally delayed, has a severe physical or mental condition or a demonstrated lack of knowledge and
skill needed to care for their child;

A child who has been abused or neglected; and

Families who request assistance coordinating their child's care.

What are the benefits of having a designated care coordinator in a medical home?

Maximizes the opportunity to get to know the families and provides the opportunity for someone in the practice to become an
"expert" in community resources and government programs;

Promotes coordination of specialty and ancillary services by having a designated person in the practice for specialists, hospitals
and home health agencies to call; and

Provides the opportunity to learn from families and to pass along what has been learned to other families within the practice.

How does a practice identify children and youth and families with special health care needs?Identification of CYSHCN within the Medical Home will facilitate planning care and referrals to needed services. Additionally,
the identified child and family can be followed for the purpose of monitoring and improving the quality of their health care.
The definition of a child with special health care needs by the Maternal and Child Health Bureau is as follows:

"Children with special health care needs are those who have or are at elevated risk for chronic physical, developmental, behavioral,
or emotional conditions and who also require health and related services of a type or amount not usually required by children."

What to call "it"?The term "care coordination" is used interchangeably throughout many different systems and organizations. You may hear the
terms case manager, service broker or services coordinator. Regardless of the term, the concept of care coordination is to help families link to supports and services to meet their
individualized needs.

Who uses care coordinators in their agencies?Care coordinators are used throughout the healthcare arena in many different ways. Their expertise depends on the role, type
of care coordination offered by the organization and the responsibilities delegated to the individual. Clinical experience
is imperative and the greatest asset is knowledge of community resources and how to access them. Examples of the various roles
of a care coordinator:

Home Health Agencies - Explore options and other available services within the agency and determine stability or readiness
for the next level of care or discharge. Provide community resources and patient education.

Hospital-based Care Coordinators /Discharge Planners - Function as an integral part of the healthcare team and work collaboratively
with other care coordinators, the family and other providers on details for discharge.

Medical Home Care Coordinators (Medical focus, family approach) - Essential component of the Medical Home Team. Work with
the primary care physicians and family advocates to facilitate access to services, promote continuity of care, provide families
support, improve functional outcomes and maximize efficient and effective use of resources.

Government for Administration of Programs - Determine eligibility for government programs, work closely with the family, other
health care providers and the care coordinators in meeting the needs of the child and family. Authorize services and provide
referrals and resources.

What are some examples of day-to-day activities a care coordinator may perform?

Develop and use forms to capture important information that needs to be shared among the Medical Home Team; and

Spend time in the office and be available for families and team members.

Family Involvement

Quote from Gina Pola-Money, parent - "Remember that the child and family live minute by minute in the world of special health
care needs. The family's involvement and agreement is crucial to the coordination of services that will help ensure that the
child receives quality health care and is able to excel in life to the best of their ability."

Key Elements of Family-Centered Services:

Recognizing that the family is the constant in a child's life, while the service systems and personnel within those systems
fluctuate;

Facilitating family/professional collaboration at all levels of service provisions: Services for an individual child; program
development; implementation, and evaluation; and policy formation;

Honoring the racial, ethnic, cultural, and socioeconomic diversity in families;

Recognizing family strengths and individuality and respecting different methods of coping;

Sharing with parent, on a continuing basis and in a supportive manner, complete and unbiased information;

Encouraging and facilitating family-to-family support and networking;

Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into service
delivery systems;

Implementing comprehensive policies and programs that provide emotional and financial support to meet the needs of families.
Helping to structure the system that best fits the family's needs instead of trying to fit the family into the system; and

Designing accessible service delivery systems that are flexible and responsive to individual family-identified needs.

Child and Family InvolvementInvolve the child in all decisions when appropriate. Listen to their wants, needs, and fears with an open mind.

Families participate in team decision-making regarding health care services and the development of the health care plan.

Expectations and roles of all team members are defined.

The family provides information regarding the child's strengths, needs, and culture, and feedback regarding services received.

Interpreter services are available if needed.

Tips and Ideas for Family Involvement

Ask the family how care coordination might help them. Offer a brief explanation or suggestions, if necessary.

Ask the family how past experiences have been with care coordination - what they liked or helped and what didn't.

Ask the family to tell you what they know (or wish they knew) about the child's condition so that you know where and how to
begin giving information. You may be surprised to learn what families do or do not know.

Ask the family where or how they've learned about their child's condition.

Ask the family how they cope or handle stressful situations. Ask them what causes them the most stress. Learn what their coping
mechanisms are so that you can assist them in identifying and redirecting negative response behaviors.

Ask the family if they would be interested in meeting or just talking with another family who has a child with a similar condition.

Ask if they have ever tried to become involved with a support group for families. If not, ask what stopped them from participating.
Some families prefer one-on-one discussion vs. group participation. Always obtain family consent prior to giving out family's
name and telephone number as a resource/support contact.

Ask the families what they like about the current health care delivery system. Then ask what things they would like to see
changed. Listen and offer support and information about how the system works. Sometimes understanding why things are structured
the way they are diffuses resentment towards the system. Or, there may be changes that you can clarify or accommodate, making
the family more receptive to your partnership.

Ask about their child's developmental process. Parents like to hear that their child is doing well developmentally. If their
child is not developmentally appropriate for age, ask what information they have regarding their child's development, and
encourage discussion with the primary care provider, if appropriate. Find out what information and resources they may be getting
from other service providers and programs that can assist them in understanding their child's developmental needs.

Keep the primary care provider informed of important health, developmental or psychosocial issues. By doing so you will create
a working partnership between the family, yourself and the primary care provider (PCP/Medical Home). Remember that "short
and to the point" is preferable.

Give the family a copy of a recent family-focused publication, such as the Exceptional Parent which can be purchased at Barnes
& Noble or ordered on the internet.

Assessment

Children and Youth with Special Health Care Needs (CYSHCN), their families, physicians, and community providers all benefit
from having a comprehensive assessment and written plan of care that includes three components: the assessment/medical summary,
emergency treatment plan, and working care plan. The child's Medical Home can decide to use one or all three of these components.

The assessment phase is vital to the care coordination process as the information obtained becomes the basis for the interventions
in the plan of care.

Assessing Needs

The assessment meeting is best done in person but can be by phone. In an effort to obtain the information some care coordinators
have sent the forms home for families to complete and return.

Assessments involve a continuous process of gathering information and require input from a variety of sources.

Assessments for care coordination of CYSHCN not only focus on the medical needs but also on the family, psychological, socioeconomic
and cultural needs.

The child with special needs together with the family, and Medical Home review health status and discuss problems and needs.

The medical summary is compiled from the information gathered at the assessment visit.

Plans of Care / Implementation / Evaluation

Working Care PlanThe working care plan is a written framework combining the needs, concerns and desired outcomes of the patient, family and
Medical Home team along with the medical treatment plan. The plan can be a written, organized note developed during a visit,
a more detailed plan of care developed during a meeting with the family and Medical Home or a comprehensive, integrated plan
developed by the child and family and a multidisciplinary team.

The critical components of the working care plan include:

A prioritized list of needs, concerns and desired outcomes;

Medical, educational and social information pertinent to the identified need, concern or desired outcome;

A plan/intervention for each need, concern or desired outcome:

The person(s) responsible for each intervention; and

The due date for the intervention to be completed and/or re-evaluated.

Families must be the center of the care coordination process in order to accomplish a successful care plan.

Examples of various approaches to working care plans (you are welcome to use these as they are or improve them to fit your
practice):

Emergency Treatment PlanThe medical summary can include emergency information and can function as both the summary and the emergency plan. Some practices
like a separate plan for children with recurrent life threatening events. This plan can include baseline vital signs, lab
and diagnostic tests, current medications and therapies. The Emergency Health Information Sheet( 133 KB) is an example of an emergency treatment plan.

Advocacy

What is an Advocate?An advocate is defined as "one who pleads the cause of another." Advocacy can be for an individual or for a group of individuals.

Who is an Advocate? Any individual or group can be an advocate. Examples of advocates include parents, physicians, nurses, clergy, social worker
and anyone that meets the definition.

Creating partnerships with large organizations, such as hospital systems or insurance companies, that will support care coordination
activities; and

Seeking grants and foundation funding.

Learning about National Resources

Where do I locate resources for children and families?National resources can be found on the internet. These resources may provide information about government benefits, types
of state programs that are funded by the federal government, and national advocacy efforts.

Resources the team may need to know are:

Government insurance and benefits programs:

www.govbenefits.govFree, confidential tool that helps you find government benefits children/families may be eligible to receive. Extensive.

Social Security AdministrationDisability determinations are generally made by a disability determination service (DDS) and can take several months. However,
if a child has a diagnosis that provides for presumptive eligibility, a letter from the doctor certifying the diagnosis and
its severity will allow for the patient to begin to receive services for up to 6 months while the application is being processed.

Disability.govUsers can learn about what services the government can provide. Comprehensive federal web site of disability-related government
resources with links to state information.

Advocate groups:

Family VoicesFamily Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth,
particularly those with special health care needs. Locate centers by state, F2F HICs (Family-to-Family Health Information
Centers)

Parent to Parent USAA national nonprofit organization that provides support to state Parent to Parent organizations; provides links to state organizations;
provides a Matching Listserv to help organizations connect families to each other; and provides links to other organizations
that serve families.

National Federation of Families for Children's Mental HealthA national family-run organization that provides support for local chapters; provides information for policy-makers and agencies
that develop and provide services; provides training to parents and professionals to foster partnerships; and provides conferences
to help improve practice.

Genetic AllianceA nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of
openness centered on the health of individuals, families, and communities; their site provides access to myriad resources,
services, policies, and publications.

American Academy of PediatricsProvides information for pediatric providers including health information; practice guidelines; publications including the
journal "Pediatrics"; professional education resources; advocacy information; and links to local chapters. Also includes
a Parenting Corner for families.

MCH Library Community Services LocatorThis maternal and child health resources page from Georgetown University provides links to organizations that provide statewide
or nationwide services for families; also provides links to web sites that provide listings of local services.

Care Notebook( 2.7 MB)Track your child's care, health, and other information in this care notebook with pages from 10 different states. The Word
document can be modified by you.

Learning about Resources in Your State

Where do I locate resources for children and families?State and local resources can be found on the internet also. Many times asking parents of children with special health care
needs, social workers, case managers, state and community organizations can identify a wealth of resources. For lists of resources
in your state, see "Resources" below.

What resources are needed by CYSHCN?An individual needs assessment should be completed with each child/family to identify the resources that are required. It
is important to be aware of parental readiness for information. Timing is everything when interacting with people who are
in crisis.

Resources

Information & Support

The resources below include government insurance and benefits programs; state governments; state Title V programs for CYSHCN;
early intervention programs; public education agencies; community resources agencies; mental health resources; dental resources;
professional organizations; and advocacy and support groups.

For Professionals

www.govbenefits.govFree, confidential tool that helps you find government benefits children/families may be eligible to receive. Extensive.

Utah's CHIP ProgramWebsite for Utah Children's Health Insurance Program (CHIP), a state health insurance program for children under age 19 who
do not have health insurance or qualify for Medicaid.

Utah 2-1-1A free information and referral line for health, human and community services. 2-1-1 provides information and referral on
topics such as emergency food pantries, rental assistance, public health clinics, child care resources, support groups, legal
aid, and a variety of non-profit and governmental agencies. The online directory provides anytime access to the same information.

Salt Lake County Parks and Recreation Adaptive ProgramsAdaptive recreation programs designed for individuals with special needs, however, everyone is welcome to participate in any
program or class. This site lists socialization activities, classes, sports, and other adaptive programs in the Salt Lake
Valley.

Child Health & Safety InformationA website by Primary Children's Medical Center that offers links to brochures in English and Spanish on everything from car
seats to child abuse prevention.

Diversity Outreach List( 95 KB)Includes listings of bilingual mental health providers, walk-in clinics for people with no insurance, and Hispanic resources
in Utah.

Oral Health ProgramThe Oral Health Program at the Utah Department of Health provides information about fluoride supplements and sealants for
children; information about best practices; links to information about local water source fluoride levels; and links to other
resources.

ASTDD: Oral Health for CSHCN Best PracticesThe Association of State and Territorial Dental Directors (ASTDD) provides the best practices report "Oral Health of Children,
Adolescents, and Adults with Special Health Care Needs."

Genetics in Primary Care Institute (GPCI)Increases collaboration in the care of children with known or suspected genetic disorders. Includes health supervision and
management guidelines, and other useful resources; a collaboration among the Health Resources & Services Administration, the
Maternal & Child Health Bureau, and the American Academy of Pediatrics.

For Parents and Patients

Support

Utah Family VoicesLocal chapter of a national, grassroots clearinghouse for information and education concerning the health care of children
with special health needs.

Family VoicesFamily Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth,
particularly those with special health care needs. Locate centers by state, F2F HICs (Family-to-Family Health Information
Centers)

General

Utah Parent CenterA state-wide non-profit organization founded in 1984 that provides training, information, referral, and assistance to parents
of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional
issues. Staff consists primarily of parents of children and youth with disabilities.

Center for Parent Information and Resources (DOE)Links to local Parent Centers that are resources for education and training for parents of children with disabilities. Lists
local conferences, support groups, autism information, advocacy tips, and suggestions for finding school and other local services;
funded by the U.S. Department of Education, Office of Special Education.